I Do My Own Stunts

“He’s got his crash helmet on” chuckled the parking garage attendant as he made the genius observation that my baby was indeed wearing a helmet that, yes, resembles a crash helmet.  Part of me wished I could burst into tears and make up a story that contains some horrible reason why he was forced to wear such a contraption, but I did the polite thing and laughed along.

Sporting the new cranium helmet

So yes, the most visible new addition to Connor’s journey is his cranium helmet.  Most likely due to his desire/need since birth to turn his head to the left, his head became “vaulted” on the left side.  He will have to wear the helmet for about four months to squish his head into the appropriate shape.  His misshapenness was so severe that his ears were actually offset from each other by about half an ear.  Connor is tolerating the helmet quite well.  He wears it 23 hours a day unless it is super hot and/or humid out and then I cannot bear to make him wear it all day.

Most people are very sweet and almost hesitant when asking or speaking about the helmet.  We’ve had other parents whose child has worn a helmet come up, share a little of their story and then, without fail, show off their kid’s now basketball round head.  Sometimes I go into why his helmet wearing is a little different than most (most kids wear the helmet because of a flat back of the head), but most of the time I just smile and nod.

Other medical updates in the last few weeks:

• Connor had an ultrasound of his abdomen as liver and kidney function issues often accompany Joubert Syndrome.  For the first time in what seems like forever we received good news - his liver and kidney look normal!
• Blood work is being done for genetic testing.  There are two ways JS happens - either genetically or spontaneously.  I’m hoping for Connor’s to be the spontaneous form…if it genetic that means more testing for the rest of us and could make family planning more difficult for Clara and others in our family.  And holy cow genetic testing is expensive.  Immediately did a “Thank you Lord for health insurance and medical assistance” when I opened that bill!  I’m not sure how families without health insurance or who can’t navigate the system have a special needs child - it is so expensive and daunting.



Connor after Physical Therapy

• We are now being visited by three lovely therapists - weekly Occupational and Physical Therapies and Vision Therapy every other week.  We are already seeing progress - Connor is doing MUCH better at holding his head up and a few days ago he lifted his head while being held belly down.  Yup - Brent and I both got teary eyed at that one as lifting his head while on his belly was one huge milestone we noticed early on Connor wasn’t meeting.

The biggest adjustment these last few weeks has been trying to figure out how all these ongoing therapy and doctor appointments fit into our already jam packed and very calendared lives.  So far, we’ve been able to make it work this spring and it looks like we’ll make it through the summer just fine.  I’m nervous for fall once school starts again, my job gets “fall crazy” and the possibility of Brent starting to travel for work looms. It’s just a lot.  I am so thankful that Connor has a wonderful woman (ok, really a whole additional family) to take care of him while we’re at work.  Molly (yup, that’s her name, too) is God-sent and I’m reminded of that every time she asks about an appointment or agrees to have a therapist come into her home to do a session.  God has given us what we need to do this so far and so in the moments that I feel like it’s all too much I need to remember that what is needed will continue to be provided.

Thanks for your love, prayers, well wishes, offers of help, story sharing, advice and reading.  We appreciate it! :)